I. Introduction
All around the world, people with mental disabilitiesFootnote 1 are forced to take medication, are restrained, and are subject to other types of behavioral therapy against their will.Footnote 2 This is especially true of people who are institutionalized.Footnote 3 Many of these intrusions are violations of international human rights principles. Pain inflicted in the name of treatment is increasingly recognized as a violation of international law.Footnote 4 People with mental disabilities are often stripped of many of their basic rights,Footnote 5 including the right to determine what is done to their bodies.Footnote 6 For over four decades,Footnote 7 lawyers in the United States have argued that involuntarily committed psychiatric patients have a right to refuse treatment.Footnote 8 This argument is mainly based on the Fifth, Sixth, Eighth, Ninth and Fourteenth Amendments of the United States Constitution, as well as on state common law and constitutional law.Footnote 9 There are also United Nations resolutions as well as regional human rights laws that recognize the right to refuse treatment.Footnote 10
This article compares the prevailing law on the right to refuse treatment for people with mental disabilities in an institutional setting in three different nations in three different regions: North America, Africa, and Latin America, and specifically the United States, Kenya, and Brazil. I have chosen countries in Africa and Latin America because these are two regions with an established regional system of international human rights and disability law,Footnote 11 and little has been written on the right to refuse treatment in these countries.Footnote 12 The United States, with a robust area of case law on the subject, is used as a comparator.
First, I will discuss the significance of the right to refuse treatment and the historical factors that have contributed to making it a highly contentious issue. Next, I will consider the United Nations Convention on the Rights of Persons with Disabilities (CRPD), as well as other United Nations documents, to lay a framework for understanding international mental disability law and the right to refuse treatment. For comparison purposes, I will briefly discuss the law in the United States regarding the right to refuse treatment and will compare the right to refuse treatment in Kenya and Brazil. Finally, I will conclude with some thoughts on future steps to ensure that people with mental disabilities in institutional settings do have the right to refuse treatment so that “no” really will mean no.
II. History
A. What is Treatment?
1. Continuum of Intrusiveness
Any discussion of the right to refuse treatment must first begin by explaining what is meant by the term “treatment.” There are many different types of treatment. Noted scholar and professor Bruce J. Winick looks at different types of treatment on a “continuum of intrusiveness” scale based on the treatment's potential to interfere with an individual's physical or mental processes.Footnote 13 The scale of intrusiveness is determined by the following factors: (1) the nature, extent, and duration of the effects of the technique; (2) the extent to which the effects of the technique can be avoided; and (3) the extent to which the technique requires actual physical intrusion.Footnote 14
2. Psychotherapy and Behavioral Therapy
Psychotherapy, referring to the therapeutic interaction between a trained professional and a patient, is considered by most to be the least intrusive form of therapy as it can easily be resisted by the patient and does not involve any physical intervention from the therapist.Footnote 15
Behavioral therapy, on the other hand, is considered to be minimally intrusive, both in theory and practice, and includes both positive (reinforcing good behavior) and aversive therapy (using unpleasant stimuli to discourage unwanted behavior).Footnote 16 Behavioral therapy is considered more intrusive than psychotherapy because behavioral therapy may involve consequences which may be physically painful, psychologically harmful, or difficult to resist. However behavioral therapy conducted via positive enforcement is considered to be less intrusive than any type of medication, seclusion, and/or restraint. Behavioral therapy is commonly seen in the treatment of individuals with mental disabilities in prisons.Footnote 17
3. Psychotropic Medications
Psychotropic medicationFootnote 18 is considered to be the next least intrusive treatment on Winick's continuum and has been at the center of most of the right to refuse treatment cases in the United StatesFootnote 19 due to its frequent use in public mental health facilities.Footnote 20
Many psychotropic medications trigger unwanted side effects.Footnote 21 In fact, prior to the 1990s, many antipsychotic drugs (especially those treating schizophrenia) caused significant side effects.Footnote 22 Many patients who took these neurolepticsFootnote 23 developed permanent and sometimes disabling neuromotor syndromes such as tardive dyskinesia.Footnote 24 Further, a small number of patients actually developed a severe, sometimes fatal reaction known as “neuroleptic malignant syndrome.”Footnote 25
Treatment in the form of psychotropic medication has a high potential for overuse and nontherapeutic use, and is often administered despite the patient's objection.Footnote 26 Its side effects, along with the fact that it is often times forcibly injected or otherwise administered, arguably make this form of treatment very intrusive.Footnote 27
It is vital to note an important distinction here between an individual who voluntarily seeks help from a professional therapist and is subsequently prescribed medication and an individual who is in a psychiatric facility. An individual seeking treatment from a therapist who gives him a prescription, has the choice to politely decline or to go see another doctor.Footnote 28 However, in an institution, a very different scenario occurs. Many times, individuals in institutions are forced to take medications against their will. If they do not comply, they often face injection, seclusion, restraint, or other forms of punishment.Footnote 29
4. Seclusion and Restraints
People with mental disabilities are often subject to seclusion and restraints, either as a means of containing them or as a form of punishment.Footnote 30 While the use of seclusion (and certainly restraints) is arguably very high on the scale of intrusiveness, it is hard to determine exactly where these fall on the continuum due to the relative degree of restrictiveness amongst the various forms of restraints.Footnote 31 I have chosen to place them between psychotropic medications and what I consider to be more physically intrusive methods of treatment including electroshock therapy and psychosurgery.
Seclusion is also used sometimes as a form of punishment for persons with mental disabilities in institutions. Seclusion and solitary confinement (i.e. physical isolation for 22–24 hours a day) are often used as forms of control over people with mental disabilities in institutions. Historically, solitary confinement was also used as a rehabilitation method for prisoners.Footnote 32 Its side effects can be serious and include insomnia, confusion, and hallucinations. The former Special Rapporteur on the Convention Against Torture, Manfred Nowak, has concluded that seclusion and solitary confinement may constitute torture or ill-treatment.Footnote 33 Footnote 34
Restraints can take on many forms including the use of leather straps, tying people to bed frames, and restraining people to caged beds.Footnote 35 People with mental disabilities have also been found chained to trees,Footnote 36 walls,Footnote 37 or outdoor cages.Footnote 38 Side effects of prolonged restraint not only include exaggerated psychological damage, but can also lead to physical long-term harm including muscle atrophy, life-threatening deformities, and organ failure.Footnote 39 According to Nowak, “there can be no therapeutic justification for the prolonged use of restraints, which may amount to torture or ill-treatment.”Footnote 40
5. Electroconvulsive Therapy (“ECT”)
Electroconvulsive therapy (“ECT”) is next in line on the scale of intrusiveness, due to its side effects and the direct effect on thought processes. Side effects of ECT may include long- and short-term memory loss, nausea, vomiting, headache, muscle ache or spasms, and serious heart problems.Footnote 41
ECT can be administered either in its modified or unmodified form. The modified form involves the use of anesthesia and muscle relaxants. This method, although still controversial, is much more widely accepted than ECT in its unmodified form, which does not involve anesthesia or muscle relaxants. In fact, Professor Michael L. Perlin, a leading legal scholar in the area of disability law, calls unmodified ECT “particularly barbaric.”Footnote 42
The Council of Europe's (COE) Committee for the Prevention of Torture (CPT), in its eighth General Report, recommended that ECT always be administered in a modified form.Footnote 43 In some nations, unmodified ECT is still used,Footnote 44 although prevailing professional wisdom does not condone it.Footnote 45 In some circles, ECT has developed a reputation as a form of torture. It has been reportedly used to torture prisoners in Brazil, El Salvador, Morocco, and South Africa under apartheid.Footnote 46 Many countries, including the United States, still use ECT but only in its modified form.Footnote 47
6. Psychosurgery
Psychosurgery is widely considered to be the most intrusive form of treatment. It consists of the surgical removal or destruction of brain tissue with the intent of altering emotions and behavior.Footnote 48 Psychosurgery is a direct intervention into the brain, which cannot be resisted by the patient, and surgically alters the individual's thoughts, feelings, behavior, and potentially his very identity.Footnote 49 It is irreversible, as destroyed brain tissue does not regenerate, and permanent alteration in personality may result in some cases.Footnote 50
This article will concentrate on the administration of psychotropic medication due to the fact that it is the modality of treatment most commonly used in in-patient psychiatric treatment facilitiesFootnote 51 and because it is the subject of much of the right to refuse treatment case law.Footnote 52
B. The Debate Over the Fundamental Right to Refuse Treatment
Professor Perlin considers the right to refuse treatment as the “pivotal issue in the determination of the future direction of the relationship between law and mental health.”Footnote 53
There has long been a debate between physicians, concerned with treating patients considered to be ill, and patients’ rights defenders, who advocate for patient autonomy and fundamental human rights.Footnote 54 The former is generally referred to as the “medical model” and primarily focuses on health as a societal value with a corresponding right to treatment,Footnote 55 while the latter is generally referred to as the “civil rights model”Footnote 56 and is founded on values of autonomy and equality.Footnote 57
The “right to treatment” generally refers to an individual's constitutional right to receive treatment for a mental disability in a psychiatric institution. It is a minimum treatment standard that is meant to afford the individual with an opportunity to improve his or her mental condition.Footnote 58
For proponents of the right to refuse treatment, there are two overarching issues at play: (1) the abuse of psychotropic medications, and (2) the assurance of patient autonomy.Footnote 59 First, with respect to the abuse of psychotropic medications, there are significant risks to the patient including misdiagnosis and misadministration. There are even questions as to the extent to which psychotropic medications actually help the patient, even where the patient has been correctly diagnosed.Footnote 60 There is also evidence that psychotropic medications are often used to sedate patients to make them more manageable,Footnote 61 to punish them,Footnote 62 or for administrative convenience,Footnote 63 rather than to afford any real therapeutic benefit.Footnote 64 This is especially true in in-patient facilities, due to overpopulation and insufficient staffing.Footnote 65
Secondly, patient autonomy advocates argue that many persons with mental disabilities are in fact able to make rational decisions regarding their treatment, and psychiatrists and other medical professionals should listen to and respect their opinions. Many patients with psychiatric diagnoses are no less competent than other medical patients to make these types of decisions regarding their treatment.Footnote 66 In cases where a patient has made known their desire to refuse treatment, if the medical professional still believes that the recommended treatment is necessary after considering the patient's concerns, there should be a forum available to that patient, such as an administrative review process or formal court proceeding, to resolve the issue in the best possible manner for the patient.Footnote 67
The acknowledgement of the right to refuse treatment is a way to include the patient in the decision-making process.Footnote 68 Additionally, research shows giving individuals the right to refuse treatment can have therapeutic benefits.Footnote 69 Including the patient in the decision-making process may provide the patient a feeling of inclusiveness, which can in turn have a positive impact on the patient's future behavior and help initiate healing.Footnote 70 Other systemic benefits include providing checks on doctors and staff in clinical settings, ensuring medication is not used as a tool for punishment or convenience for staff, ensuring due process rights for persons with mental disabilities, and providing an extra layer of protection against the administration of inappropriate medications that could potentially cause severe side effects.Footnote 71
I argue that the right to receive treatment and the right to refuse treatment can comfortably coexist. This is based on the concept that meaningful, ameliorative individualized treatment is available to an individual at a facility in which he has been committed, and that the treatment is logically geared toward improving the individual's condition so that he can ideally be released.Footnote 72
C. Therapeutic Jurisprudence
A discussion of the right to refuse treatment would not be complete without mentioning therapeutic jurisprudence, or the study of how legal systems affect the emotions, behaviors, and mental health of people.Footnote 73
1. The Value of Therapeutic Jurisprudence
Therapeutic jurisprudence is centered around a commitment to dignity.Footnote 74 It presents a new model for assessing the impact of case law and legislation, and recognizes that the law can have therapeutic or anti-therapeutic consequences as a therapeutic agent.Footnote 75 The concept of therapeutic jurisprudence is vital to the study of law and human rights because it “asks us to look at law as it actually impacts people's lives”Footnote 76 by focusing on how the law influences the emotional life and psychological well-being of people in the judicial system.Footnote 77 It is also part of a growing comprehensive movement in the legal field toward handling legal issues in a more humane and psychologically optimal way while focusing on collaboration, creativity, and respect among lawyers and clients with mental disabilities.Footnote 78
There is a strong therapeutic jurisprudence argument for protecting the right to refuse treatment for individuals with mental disabilities.Footnote 79 Studies show that in cases of judicial review, there are therapeutic jurisprudence benefits in that participation in judicial decisions provides people with mental disabilities opportunities to present their case in a more formal legal setting.Footnote 80 Professor Ronner's “3 Vs” argument states:
Litigants must have a sense of Voice or a chance to tell their story to a decision maker. If that litigant feels that the tribunal has genuinely listened to, heard, and taken seriously the litigant's story, the litigant feels a sense of Validation. When litigants emerge from a legal proceeding with a sense of Voice and Validation, they are more at peace with the outcome. Voice and Validation create a sense of Voluntary participation, one in which the litigant experiences the proceeding as less coercive. Specifically, the feeling on the part of litigants that they Voluntarily partook in the very process that engendered the end result or the very judicial pronunciation that affects their own lives can initiate healing and bring about improved behavior in the future. In general, human beings prosper when they feel that they are making, or at least participating in, their own decisions.Footnote 81
Ensuring people with mental disabilities receive due process provides, at a very minimum, the appearance of fairness. This is therapeutic because it contributes to the individual's sense of dignity and conveys that he or she is being taken seriously.Footnote 82
2. The Importance of Effective Counsel in Addition to Therapeutic Jurisprudence
Advancing the prevalence of therapeutic jurisprudence for people with mental disabilities alone isn't enough. The right to effective counsel is also imperative to ensure that the rights of persons with mental disabilities are more than mere “paper victories,” but that their rights, including the right to refuse treatment, are actually protected.Footnote 83 In their article, Voiceless Billy Budd: Melville's Tribute to the Sixth Amendment, Professor Amy Ronner and Judge Juan Ramirez recognize the right to effective counsel as “the core of therapeutic jurisprudence,”Footnote 84 and suggest that the attorney is essential in the legal context for the mentally disabled, especially in criminal proceedings. The attorney assists individuals in articulating their wishes and telling their stories, and aids in effectuating the individuals' participatory interests, thus giving them a voice and validation.Footnote 85
In practice, lawyers are generally held to the standard of “reasonable competence.” They have a duty to keep up to date on changes in the law and are charged with being vigorous advocates for their clients. When representing a client with a mental disability or dealing with an involuntary civil commitment hearing, a lawyer naturally faces heightened obligations in providing effective counsel. At a minimum, counsel should have a “competent understanding of the legal process of involuntary commitments as well as fair knowledge of the range of alternative, less restrictive treatment and care options available.”Footnote 86 Counsel should fully investigate and comprehend the patient's circumstances prior to an involuntary civil commitment hearing or trial.Footnote 87 To be effective, this requires extensive work with the client to understand the client's needs and options.Footnote 88 Therefore, counsel must wear two hats throughout the representation and act as both an advocate and an adversary.Footnote 89
D. The Need for Protection for People with Mental Disabilities in Institutions
I am focusing this article on persons with mental disabilities who are in institutions because they are more prone to become victims of abuse and coercion than people with mental disabilities who are not institutionalized.Footnote 90 Thus, “treatment,” for the purposes of this article, is limited to in-patient psychiatric treatment, meaning patients who are committed to institutions for mental disabilities. This includes both voluntary and involuntary civil commitment. “Voluntary commitment” is where a patient willingly admits him or herself into an institution, while “involuntary civil commitment” is the admission of individuals against their will into a mental health unit. Typically, in order to involuntarily commit or treat an individual without his or her prior consent it must be shown that the individual is “a danger to him or her self” or “a danger to others.”Footnote 91 In general, there are three reasons why an individual would be subject to involuntary civil commitment: (1) mental illness, (2) developmental disability, or (3) substance addiction.Footnote 92
1. Inadequate Facilities and Unhealthy Living Conditions
Forced treatment, as discussed above can take on various forms, and can even rise to the level of intrusion on fundamental human rights. But it is also important to recognize that detention in a mental health facility, in and of itself, may also be a violation of an individual's fundamental rights to privacy liberty, and due process.Footnote 93 This is due to the fact that a vast majority of psychiatric institutions are state-owned and all too often the State fails to live up to its obligations to provide individuals in its custody with adequate food, water, medical care, and clothing, the absence of which may ultimately constitute torture and ill-treatment.Footnote 94
Many persons with mental disabilities live in horrible conditions in large, segregated institutions and are subject to various forms of abuse. Practices that would otherwise be deemed torture are justified on medical and economic grounds. Persons with mental disabilities face chemical and physical restraints, “corrective” medical interventions, physical and sexual violence, and often are forced to live in facilities that are not adapted to their needs.Footnote 95
Contrary to popular belief, locking up and forcibly medicating people with mental disabilities is not in their best interests nor is it in the best interest of society as a whole. A strong argument can be made that, rather than protecting public safety, this theory actually decreases public safety. And instead of helping psychiatric patients, in reality, many are greatly harmed.Footnote 96 Instead of seeking meaningful treatment and steps toward inclusion into society, this method secludes people with mental disabilities in addition to denying individuals their right to freedom and the right to decline psychiatric treatment. This methodology also fails to recognize that many people with mental disabilities are quite capable of living in society and of making their own informed decisions regarding treatment and therapy.
Historically, the European Court of Human Rights (ECtHR) has been deferential to forced medication provided particular procedural standards are met and doctors are involved in the decision-making process.Footnote 97 However, more recently, the ECtHR has recognized that poor conditions of confinement can constitute inhuman or degrading treatment. For example, in Stanev v. Bulgaria Footnote 98 (2012), Mr. Stanev, a patient diagnosed with schizophrenia, was improperly detained for seven years by his guardian (without a court hearing) in a dilapidated facility that lacked adequate food, running water, access to toilets, privacy, or almost any form of meaningful activity.Footnote 99 The ECtHR found that these conditions amounted to “degrading” treatment and thus violated Article 3 of the European Convention on Human Rights (ECHR).Footnote 100 The Court further found that his long-term detainment in the facility without a court hearing constituted deprivation of liberty.Footnote 101 Stanev is a significant case because it is the first case in which the ECtHR found a violation of Article 3 of the ECHR, which calls for an absolute prohibition on torture, inhuman or degrading treatment, or punishment in an institution for people with disabilities.Footnote 102
2. Abuse and Misuse of Medications and Treatments
In many countries, people with psychosocial disabilities can be legally administered medication without their consent. For example, patients who pose a danger to themselves or others around them are rarely given the opportunity to refuse treatment.Footnote 103 Additionally, patients who have clearly demonstrated a lack of capacity to give proper consent are seldom informed of the type or affects of treatment administered, let alone given the opportunity to refuse such treatment.Footnote 104 These omissions are clearly violations of internationally recognized principles under the United Nations Convention on the Rights of Persons with Disabilities (CRPD) discussed more fully below in section III(A).Footnote 105
One argument in support of the right to refuse treatment is the potential for abuse and misuse. All too often medications, restraints, and other forms of treatment are used to sedate or punish patients rather than to actually treat their symptoms. Even if treatment is administered with good intentions, it often leaves a powerful, sometimes lasting effect on the patient. For example, psychotropic medications are known to “affect the mind, intellectual functions, perception, moods, and emotions.”Footnote 106
Social scientists and courts have recognized that the misuse of psychotropic medication, such as for submission, control, or unnecessary sedation rather than for healing or treatment purposes, is a concern in that medication decisions made by someone other than an independent party could lead to such misuse.Footnote 107 Research has shown that a right to refuse treatment accompanied by due process proceedings are effective in preventing misuse.Footnote 108
Additionally, due to their inability to leave the facility, patients in psychiatric institutions are especially susceptible to the use of experimental treatments with the purpose of correcting and alleviating particular ailments or disabilities, including sterilization and/or abortion, ECT, and mind-altering medications. These treatments can be intrusive and irreversible and are often administered without consent.Footnote 109 The fact that some practices (such as unmodified ECT) are still used in some nations, while other nations have completely outlawed the same practices, reminds us of “the gap between the formal equality of persons with [mental] disabilities and the reality, which is governed by ‘exceptions’ and medical rules.”Footnote 110
All of the above illustrations demonstrate why international law and conventions such as the CRPD are of vital importance to promoting, protecting, and enforcing the rights of people with mental disabilities.
Under international human rights law, while States have the primary responsibility for the protection of rights, it is the international community that bears the subsidiary responsibility of protection in areas where national institutions present failures or omissions in the protection of rights.Footnote 111 The main objective of these international safeguards is to peremptorily provoke advances in the national human rights protection systems.Footnote 112
III. International Documents
A. Convention on the Rights of Persons with Disabilities (CRPD), 2006
The Convention on the Rights of Persons with Disabilities (CRPD)Footnote 113 is an international human rights treaty adopted by the United Nations General Assembly on December 13, 2006.Footnote 114 It opened for signatures on March 30, 2007, and came into force on May 3, 2008, after ratification by the 20th State Party.Footnote 115 The CRPD has been signed by 160 States and has been ratified, accessed, or confirmed by 161 State Parties.Footnote 116 The CRPD was the first human rights treaty to be ratified by a regional integration organization, the European Union.Footnote 117
The United States, Brazil, and Kenya have all signed the CRPD. The United States signed in July of 2009, but has yet to ratify it,Footnote 118 thus making it a non-binding authority in the United States.Footnote 119 Brazil signed in March of 2007 and ratified it in August 2008.Footnote 120 Kenya signed in March of 2007 and ratified it in May 2008.Footnote 121
1. The CRPD and Persons with Mental Disabilities
The CRPD is an international human rights treaty that speaks specifically about persons with disabilities. It is all-inclusive meaning that it addresses those persons with both physical and mental disabilities. It adopts a broad categorization of persons with disabilities and reaffirms that all persons, with all types of disabilities, must enjoy all human rights and fundamental freedoms. It is also the only international convention on the rights of persons with disabilities that is legally binding and enforceableFootnote 122 (also known as “hard law”). Other international documents, such as the UN Principles for the Protection of Persons with Mental Illness and for the Improvement of Mental Health Care, discussed below in section B(4), and the Declaration on the Rights of Mentally Retarded Persons, discussed in section B(2), are soft law, and thus not legally binding or enforceable.Footnote 123
Before the CRPD, the only hard law documents on the issue of human rights and disabilities were the International Covenant on Civil and Political Rights, discussed in section B(1), and the International Covenant on Economic, Social and Cultural Rights. Unfortunately, these do not deal specifically with disabilities. Nothing before the CRPD was international hard law specifically targeted to persons with disabilities.Footnote 124 As such, Professor Perlin refers to the CRPD as “the most comprehensive document on international disability law ever created.”Footnote 125
2. The CRPD and the Right to Refuse Treatment: Articles 14, 15, and 25
Relevant articles of the CRPD that speak to the right to refuse treatment include Article 14 (Liberty and security of the person), Article 15 (Freedom from torture or cruel, inhumane or degrading treatment or punishment), and Article 25 (Health).
Article 14 explicitly addresses liberty and security of the person.Footnote 126 It provides that people with disabilities shall have the right to liberty and security of person, on an equal basis with others, and that individuals shall not be deprived of these rights unlawfully or arbitrarily.Footnote 127 It further states that the mere existence of a disability is not justification for deprivation of liberty.Footnote 128 It goes on to provide remedies and enforcement measures declaring that if an individual is deprived of liberty, States Parties have a duty to ensure that individuals are entitled to guarantees in accordance with international human rights law.Footnote 129 This Article could be interpreted broadly to include the right to refuse treatment in terms of liberty of the person.
Article 15 discusses freedom from torture or cruel, inhumane or degrading treatment or punishment,Footnote 130 and provides that no one shall be subjected to medical or scientific experimentation without his or her free consent and that States Parties shall take all effective legislative, administrative, judicial, or other measures to prevent persons with disabilities from being subjected to torture or cruel, inhuman or degrading punishment or treatment.Footnote 131
Article 25 requires health care professionals provide the same care to persons with disabilities as any other person in a variety of ways.Footnote 132 Specifically, it provides that States Parties have a duty to provide people with disabilities with:
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1. the same range, quality, and standard of free or affordable health care;
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2. the specific health care services needed due to their disability;
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3. health care services as close in proximity as possible to communities, including rural communities;
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4. the same standard of quality of care as others including requiring informed consent, and raising awareness of human rights, dignity, autonomy, and needs of persons with disabilities;
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5. protection from discrimination against persons with disabilities with regard to health insurance and life insurance; and
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6. protection from discrimination in the denial of health services, food, and fluids based on disability.Footnote 133
3. The CRPD and Access to Adequate and Dedicated Counsel: Article 13
Access to adequate and dedicated counsel is one of the most critical issues in bringing life to international human rights law within a mental disability law context.Footnote 134 In many nations, mental health laws are non-existent, thus illustrating how those States’ legislative bodies have completely failed to address the needs of people with mental disabilities.Footnote 135 Even worse, other countries lack provisions providing legal counsel altogether at an adjudication or civil commitment proceeding – regardless of the defendant's mental health.Footnote 136 Still other countries have what is referred to as the “warm body” problem, in which legal counsel appears to be present in name only.Footnote 137
The CRPD mandates that “States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.”Footnote 138 The CRPD further provides:
States Parties shall ensure effective access to justice for persons with disabilities on an equal basis with others, including through the provision of procedural and age appropriate accommodations, in order to facilitate their effective role as direct and indirect participants, including as witnesses, in all legal proceedings, including at investigative and other preliminary stages.Footnote 139
Availability of adequate counsel is so important to protect the rights of all people with mental disabilities because without it, it would be “virtually impossible to imagine the existence of the bodies of involuntary civil commitment law, [the] right to treatment law, [the] right to refuse treatment law, or any aspect of forensic mental disability law that are now taken for granted.”Footnote 140
B. Other UN Documents
Prior to the CRPD, there were international instruments that spoke to substantive protections for persons with mental disabilities, however these instruments did not contain the enforcement mechanisms that are present in the CRPD.Footnote 141 These other documents are discussed below.
1. The International Covenant on Civil and Political Rights, 1976 (“ICCPR”)
The International Covenant on Civil and Political Rights (“ICCPR”),Footnote 142 part of the International Bill of Human Rights, is a United Nations treaty that came into force in 1976. It ensures the basic human rights principles of dignity and autonomy, as well as the right to be recognized as a person before the law.Footnote 143 It also allows people to make individual life choices such as personal and religious beliefs on the basis of their conscience.Footnote 144
Other rights, such as the right to privacy (Article 17), and the right to freedom of thought, conscience, and religion (Article 18), are also relevant in ensuring the effective enjoyment of the right to decide autonomously about one's life.Footnote 145
Article 7 of the ICCPR ensures protection from torture or other forms of inhuman or degrading treatment and provides that no one shall be subjected to medical or scientific experimentation.Footnote 146 While Article 9 provides that persons have the right not to be arbitrarily arrested or detained, it also sets out the basic human rights standards with regard to treatment in mental health facilities. Treatment must be directed towards preserving and enhancing the personal autonomy of the patient, and be provided in accordance with applicable standards of ethics for mental health practitioners, including internationally accepted standards.Footnote 147 Patients have the right to be treated with the least restrictive or intrusive treatment, and on the basis of an individually prescribed plan, discussed with the patient and reviewed regularly by qualified professional staff.Footnote 148
Finally, Article 14 provides that all persons shall have equal rights before the courts.Footnote 149 This encourages liberty and freedom, but does not establish standards for when persons with mental disabilities can be committed or treated against their will.
2. The Declaration on the Rights of Mentally Retarded Persons, 1971 (The MR Declaration)
The Declaration on the Rights of Mentally Retarded PersonsFootnote 150 (the “MR Declaration”) was adopted by the General Assembly in 1971. Despite its outdated use of the term “mental retardation,” it was the first formal recognition of people with mental disabilities by the international community.Footnote 151 It provides that whenever possible, the “mentally retarded” person should live with his family or foster parents and participate in community life.Footnote 152 If an institution is necessary, it should be provided in surroundings and other circumstances as close to normal life as possible.Footnote 153 It further provides persons with mental disabilities have a right to protection from exploitation, abuse, and degrading treatment.Footnote 154 Finally, it guarantees protections and allows for legal safeguards when persons with mental disabilities are not able to exercise their rights in a meaningful way.Footnote 155
3. The Declaration on the Rights of Disabled Persons, 1975
The Declaration on the Rights of Disabled Persons,Footnote 156 adopted in 1975, adds additional protections for persons with disabilities. For example, it provides that if a person with a disability needs to be in an institution, the environment and living condition shall be as close as possible to the normal life of a person his or her own age.Footnote 157 It further provides that disabled persons are entitled to measures to become as self-reliant as possible.Footnote 158
Although the MR Declaration and the Declaration on the Rights of Disabled Persons do not specifically address the right to refuse treatment, the rights and protections laid out in these documents can logically be applied to the right to refuse treatment.
4. Principles for the Protection of Persons with Mental Illness and the Improvement of Mental Health Care, 1991 (The MI Principles)
In 1991, the Principles for the Protection of Persons with Mental Illness and the Improvement of Mental Health CareFootnote 159 (the “MI Principles”) established for the first time international due process standards prior to the institutionalization of a mentally disabled person. Significantly, it was the first international document to provide basic minimum standards for treatment of people with mental disabilities in institutional as well as community settings.Footnote 160 The MI Principles set the standard, but they were not enforceable. In 1999, the court in Victor Rosario Congo v. Ecuador Footnote 161 (discussed in greater detail below in section V(A)(5)) enforced the MI Principles, thus solidifying the transition from soft law into hard law.
The MI Principles provide important substantive protections for persons who are involuntary committed including bans on sterilization, psychosurgery, and other types of irreversible treatments,Footnote 162 and also restrict the use of seclusion and physical restraints.Footnote 163 Unfortunately, these restrictions are not absolute. The MI Principles do permit the use of seclusion or restraint when “it is the only means available to prevent immediate harm to the patient or others,” and they may not be used longer than the “period it is strictly necessary for this purpose.”Footnote 164 Fortunately, a personal representative must be given notice of the physical restraint or seclusion of a patient.Footnote 165 Finally, the MI Principles also include specific provisions for conditions and patient rights inside mental health facilities.Footnote 166 For these reasons, the MI Principles were revolutionary in terms of setting the standard for civil commitment for persons with mental disabilities in international law.
Principle 11 provides protection for persons held in institutions against forced or involuntary treatment and guarantees that no treatment shall be given to a patient without his or her informed consent. “Informed consent” is consent obtained freely, without threats or improper inducements, after appropriate disclosure to the patient.Footnote 167 The disclosure must be adequate and understandable information and in a form and language understood by the patient.Footnote 168 Again, this is not without exceptions. Principle 11 permits involuntary treatment when (1) an independent authorityFootnote 169 finds that the individual lacks the capacity to give or withhold informed consent (or unreasonably withholds such consent),Footnote 170 and (2) the proposed plan of treatment is in the best interest of the patient's health needs.Footnote 171 Footnote 172 With regard to individuals placed under guardianship, Principle 11 requires the guardian be fully informed about the treatment and consent to it on the individual's behalf.Footnote 173
Before the MI Principles, there were very few procedural protections for the right to refuse treatment. While the CRPD is less specific than the MI Principles with regard to the right to refuse treatment, the CRPD has more “teeth” than the MI Principles (which has been severely critiqued in this regard), because the CRPD is a binding international document with enforcement mechanisms.Footnote 174 The CRPD is such an important treaty as it is an international law document that is legally binding and enforceable.Footnote 175
5. The United Nations Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, 1984 (CAT)
The United Nations Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or PunishmentFootnote 176 (“CAT”), adopted in 1984, is another important treaty for the rights of persons with mental disabilities. It was intended to strengthen existing international law prohibitions on torture.Footnote 177 Under CAT, a practice may constitute torture if it is an intentional act by a public official or someone acting in official capacity (or with the consent or acquiescence of a public official) and causes severe mental or physical pain or suffering to another.Footnote 178 Additionally, the “intent to cause pain” requirement can be implied as CAT does not require specific evidence of the motivations of treating professionals.Footnote 179 Further, where a practice does not rise to the level of torture, it may still be prohibited by CAT if it constitutes ill-treatment (“cruel, inhuman or degrading treatment or punishment”).Footnote 180 Finally, merely stating that a practice is therapeutic (as it protects individuals who are institutionalized) may not exclude it from being labeled as torture.Footnote 181 Thus, certain types of coerced treatment or the use of seclusion and restraints are often considered violations of CAT as well as violations of the CRPD and other international human rights treaties.Footnote 182
In terms of international documents, the MI Principles are the most detailed when it comes to the right to refuse treatment. Unfortunately, only the CRPD is hard law and therefore has more enforcement mechanisms than the MI Principles, thus the MI Principles are almost seen as obsolete now.Footnote 183
IV. Mental Health Law in the United States
A. Background on United States Mental Health Law
1. Cultural Considerations
Compared to many other countries, the United States is considered “advanced” in terms of acceptance of people with mental disabilities. Some would even argue that the United States is at the forefront of disability rights laws and advocacy. For example, some countries in Latin America have been influenced by the Americans with Disabilities Act (ADA)Footnote 184 while creating their own mental health legislationFootnote 185 and the CRPD was partially modeled on the ADA.Footnote 186 However, this has not always been the case.
Historically, people with mental disabilities in the United States were regularly sent to prisons and shelters without any treatment. They were simply sent away and segregated from society.Footnote 187 In the mid-nineteenth century, public asylums opened in pockets of the country to house people with mental disabilities. Unfortunately, individuals were often subjected to restraint, sedation, and experimental treatments while in these asylums.Footnote 188
2. The Rise of Antipsychotic Medications and Deinstitutionalization
In the 1950s, advancement in psychotropic medications revolutionized how the government treated people with mental disabilities in institutional settings in the United States.Footnote 189 After it was discovered that some newly created antipsychotic medications, particularly Chlorpromazine, could reduce or eliminate hallucinations and delusions in many individuals with schizophrenia, patients were no longer presumed destined to live in institutions and were subsequently deinstitutionalized.Footnote 190 While this form of treatment made it easier to treat people with mental disabilities in the community, it also caused many other problems including increases in the misdiagnosis of mental illness and the misadministration of psychotropic medications.Footnote 191
A second generation of antipsychotic medications was introduced in the 1990s and psychiatrists began prescribing them extensively.Footnote 192 Among these new medications was Clozapine, seen as a novel breakthrough in antipsychotic medications due to its ability to alleviate psychotic symptoms without inducing the common extrapyramidal symptomsFootnote 193 that typically accompanied therapy with conventional D2Footnote 194 blockers.Footnote 195 Clozapine also worked better than conventional neurolepticsFootnote 196 and was thought to be better at reducing negative symptoms than conventional antipsychotic drugs.Footnote 197 In short, Clozapine was seen to be a cure-all because it seemed to achieve superior therapeutic results with a much lower likelihood of extrapyramidal symptoms or the damaging neuromotor syndromes associated with neuroleptic drugs.Footnote 198 Eventually it was discovered that patients who took Clozapine for extended periods of time had a small risk of developing agranulocytosis,Footnote 199 a potentially fatal side effect in which the bone marrow stops producing white blood cells resulting in the patient's inability to fight bacterial infections.Footnote 200 However, many of these side effects can be managed or avoided and thus Clozapine has continued to remain popular.Footnote 201
3. Present Day Considerations for Americans with Mental Disabilities
In the United States, a person who enters a hospital voluntarily and shows no imminent risk of danger to himself or others may express the right to refuse treatment by stating he wishes to leave the hospital. A person admitted involuntarily, due to danger to self or others, does not have this option to leave, at least not initially. However, a person who is involuntarily committed does have the right to refuse treatment, with some exceptions. Although hospital staff may have authority to keep the patient in the institution, they may not treat him against his will, without a court order. This concept of the right to refuse treatment was built upon the basic constitutional rights to privacy, equal protection under the law, and due process.Footnote 202
Culturally speaking, in the United States, an individual's rights are traditionally paramount to competing government interests, including the rights of privacy and liberty among people with mental disabilities. In the case of involuntary commitment of an individual, the United States Supreme Court has articulated only two conditions under which the government's competing interest in insuring public health and safety may supersede those of individuals: (1) in emergency situations; and (2) in situations where the individual is unable to care for or control himself.Footnote 203
Through their police powers, government officials may exercise broad discretion to protect public health, safety, welfare, and moral behavior. The state may even employ its police power authority to involuntarily restrain patients with mental disabilities in hospital settings in certain situations. The state's police power authority stems from its legitimate interest in preventing persons with mental disabilities from harming themselves or others. “This principle of ‘societal self-defense’ has been applied ubiquitously to restrain any person who endangers the safety of others.”Footnote 204
The first government interest exception to a patient's constitutional right to refuse treatment is when a patient is an “imminent danger to self or others.” In these situations, a doctor may provide involuntary treatment, however emergency treatment must be discontinued once the immediate danger has passed, unless the patient agrees to continued treatment and provides informed consent.Footnote 205 The second exception allows treatment when the individual is deemed incompetent, and thus unable to make decisions.Footnote 206 It is important to note here that “mental disabilities” and “incompetence” are not mutually exclusive categories. Because someone has a mental disability does not automatically render him incompetent. In fact, in 1978, the Federal District Court of New Jersey held that mental illness “is not the equivalent of incompetence, which renders one incapable of giving informed consent to medical treatment.”Footnote 207
4. Access to Adequate Counsel
The right to refuse treatment is not self-executing in the United States. It requires a court order or some other type of implementing action to be effective. Thus the right to adequate counsel is especially important in these cases.Footnote 208 Unfortunately, data suggests that, in many jurisdictions, legal counsel is inadequate, disinterested, uninformed, and in some cases even hostile toward clients with mental disabilities.Footnote 209 Unfortunately, only one case involving the right to refuse treatment has recognized the need for adequate counsel. In Rennie v. Klein,Footnote 210 one of the first federal cases to find a substantive constitutional right to refuse treatment, the court originally mandated the appointment of counselFootnote 211 but later retreated from this position, instead requiring only the presence of “patient advocates”Footnote 212 to serve as “informal counsel to patients who wish to refuse [antipsychotic medication].”Footnote 213 The court further provided that “Patient advocates may be attorneys, psychologists, social workers, registered nurses, or paralegals, ‘or have equivalent experience.’”Footnote 214
B. The United States
1. Mental Health Law and the United States Constitution
The right to refuse treatment is not automatic in the United States and constitutional rights are not absolute. Instead they must be balanced against the government's interest for infringement.Footnote 215
In 1978, in the landmark case, Rennie v. Klein,Footnote 216 the United States District Court for the State of New Jersey became the first court in the United States to officially recognize that involuntarily committed patients have a constitutional right to refuse treatment in the United States.Footnote 217 The Supreme Court has also upheld the constitutionally protected right to refuse treatment.Footnote 218 However, the precise source of that right is in contention, as the Constitution does not expressly speak to the right to refuse treatment.Footnote 219
Important constitutional rights at play with respect to the right to refuse treatment are the First Amendment's right of free speech, the Sixth Amendment's right to a fair trial, the Eighth Amendment's right to freedom from cruel and unusual punishment, and the Fourteenth Amendment's guarantee of due process.Footnote 220 Some courts have also supported the right to refuse treatment via the Fourth Amendment's right of privacy and/or the substantive due process right to bodily integrity, however, discussion of the Fourth Amendment is beyond the scope of this article.Footnote 221
2. Adjudication of United States Mental Health Law
There has been a plethora of case law in the United States regarding mental health law, much of which is beyond the scope of this article. What follows is a brief summary of a few of the keystone cases that shaped the current right to refuse treatment for people with mental disabilities in institutions in the United States. It should be noted at the outset that there is extensive debate among legal scholars and professionals as to what that prevailing right actually is.
a. First Amendment
Historically, the most common constitutional provision cited to support the right to refuse treatment is the Freedom of Speech Clause contained in the First AmendmentFootnote 222 with the argument being that the First Amendment encompasses the right to think and say what one wants. Thus, persons with mental disabilities should be free from government action (forced treatment) that interferes with one's thought process absent an overriding risk to a governmental interest.Footnote 223
b. Eighth Amendment
The Eighth Amendment's protection against cruel and unusual punishment has been relied on in a variety of cases to support the right to refuse treatment. Courts have found that simply because an act is characterized as “treatment” does not necessarily make it immune from Eighth Amendment scrutiny.Footnote 224 In Mackey v. Procunier (1973),Footnote 225 a state prisoner was administered a drug against his will as part of an aversive conditioning behavior program. The drug caused paralysis, difficulty breathing, and fright.Footnote 226 The Supreme Court held that the experimental use of the drug (succinylcholine) on conscious prisoners was inappropriate due to the intentional nature of the “aversive treatment” and the cruel and unusual side effects of the drug. In fact, the Court noted, “it is not recommended for administration to fully conscious patients, apparently because of its frightening effects.”Footnote 227
In Rennie v. Klein (1978),Footnote 228 the New Jersey District Court held that the Eighth Amendment indeed prohibited psychiatric treatment in mental institutions when the treatment was “found to have no proven therapeutic value,” “its use was not recognized as acceptable medical practice,” “the adverse effects seemed unnecessarily harsh,” or it was “used improperly and for punishment rather than as part of an ongoing psychotherapeutic program.”Footnote 229
c. Fourteenth Amendment
Many cases focus on the Fourteenth Amendment's Due Process Clause.
In 1972, the Supreme Court held that criminal defendants with mental disabilities who are also incompetent to stand trial cannot be indefinitely committed on the basis of incompetence to stand trial aloneFootnote 230 and that the nature and duration of the civil commitment must bear a reasonable relationship to the purpose of the commitment.Footnote 231 In 1975, the Supreme Court again recognized that states cannot confine a mentally disabled person who is a danger to himself or others “without more,” holding that “‘mental illness’ alone cannot justify a state's locking up a person against his will and keeping him indefinitely in simple custodial confinement.”Footnote 232
Going one step further, the Supreme Court in Youngberg v. Romeo (1982) held that, in addition to the fundamental human rights of “adequate food, shelter, clothing and medical care,”Footnote 233 patients also have constitutionally protected Fourteenth Amendment liberty interests in “conditions of reasonable care and safety,”Footnote 234 “freedom from bodily restraint,”Footnote 235 and “such minimally adequate or reasonable training to ensure safety and freedom from undue restraint.”Footnote 236 Mr. Romeo was involuntarily admitted to a Pennsylvania state institution where he was restrained for many hours a day and suffered numerous injuries.Footnote 237 His mother brought suit against the institution officials for violations of his Fourteenth Amendment liberties claiming that they knew or should have known about the ill treatment of her son and that they failed to take appropriate remedial and preventative actions.Footnote 238
In determining whether an individual patient's Fourteenth Amendment rights have been violated, the liberty interests identified by the Youngberg court must be balanced against relevant state interests.Footnote 239 The holding in Youngberg shows the importance of individual rights, including freedom from restraint and conditions of adequate care, which all relate back to the right to refuse and the concept of patient autonomy and civil liberties.Footnote 240
In 1990, the Supreme Court explicitly defined the “right to refuse treatment's” place within the Fourteenth Amendment's Due Process Clause in Washington v. Harper.Footnote 241 Walter Harper, an inmate in the Washington state prison system, had a history of violence when not on antipsychotic medications.Footnote 242 During his incarceration, he was appropriately transferred to the Special Offender Center (SOC), – a state institution for convicted offenders with serious psychiatric problems – was diagnosed with manic-depressive disorder and was forced to take psychiatric medication against his will.Footnote 243 Harper filed suit alleging that the SOC failed to hold a judicial hearing before forcefully medicating him, thus violating his Fourteenth Amendment right to due process.Footnote 244 In supporting the state's right to administer medication, the Supreme Court found that the forceful administration of psychiatric medication against Harper's will did not violate the Due Process clause of the Fourteenth Amendment. Rather, the Court held that the Due Process Clause permits the state to treat a prisoner with a “serious mental illness” with antipsychotic drugs without his consent, if the inmate is “dangerous to himself or others and the treatment is in the inmate's medical interest.”Footnote 245 It is worth noting that the Harper court only addressed the right to refuse in the context of “prisoners” and left open the question of whether this right should apply to civil institutional settings as well.Footnote 246
Harper is a significant decision because it shows the tendency of the Court to give deference to medical professionals in determining treatment for psychiatric patients, rather than making these decisions through the judicial process.Footnote 247 This can however be detrimental to the patient in that it leaves the treatment plan in the hands of the medical professional and leaves little room for oversight to ensure a patient's rights aren't being infringed upon.
Alternatively, in Riggins v Nevada (1992),Footnote 248 the Supreme Court held that the Fourteenth Amendment's Due Process Clause did protect Mr. Riggins’ interest in avoiding the administration of involuntary drugs. David Riggins was convicted of murder and while awaiting trial complained of hearing voices and trouble sleeping. He was treated with antipsychotic medication.Footnote 249 The Court found Mr. Riggins competence to stand trial and his defense team requested that he be taken off the medication accordingly for the duration of the trial. The defense argued that “(1) [the] continued administration of these drugs infringed on his freedom; (2) the effect on his demeanor and mental state during trial would deny him due process; and (3) because he intended to offer an insanity defense at trial, he had a right to show jurors his true mental state.”Footnote 250 The Court agreed holding that the forced administration of antipsychotic drugs during trial violated Mr. Riggins’ rights protected by both the Sixth and Fourteenth Amendments.Footnote 251 The Court further noted, “The forcible injection of medication into a nonconsenting person's body represents a substantial interference with that person's liberty.”Footnote 252
More recently, in Sell v. United States (2003),Footnote 253 the Supreme Court imposed strict limitations on the rights of lower courts to forcibly administer antipsychotic medication to a criminal defendant who had been deemed incompetent to stand trial for the sole purpose of making him competent to stand trial.Footnote 254
3. Domestic Mental Health Legislation in the United States
The United States Congress has produced only limited amounts of domestic legislation on the right to refuse treatment for people with mental disabilities as historically this right was guaranteed via the United States Constitution as outlined above.
However, in 1963, President John F. Kennedy signed into legislation the Community Mental Health Centers Act (CMHA).Footnote 255 Through federal funding, this innovative law relocated people with mental disabilities from prisons and shelters, as well as facilitated the deinstitutionalization of people with mental disabilities, into comprehensive government supported community mental health centers.Footnote 256 The idea was to help integrate people with mental disabilities into society while still receiving mental health treatment at work or at home.Footnote 257 President Kennedy's vision was to build 1,500 new facilities with the hope of reducing the approximately 500,000 people in state mental hospitals to half that number.Footnote 258 While the idea was good in theory, unfortunately, the funding was not adequate to maintain the centers and the program floundered. The legislation failed to allocate sufficient funding for the centers in the long term. Instead, the funding was left to the states and localities. Unfortunately, that support never came to fruition.Footnote 259 During President Ronald Reagan's administration, leftover funding from the act was converted to a mental health grant thus allowing states to spend the funds at their discretion.
While some states tried to provide quality community mental health care, others did not even attempt it. Those that did were not able to sustain their initiatives in the long run. With budget cuts, mental health programs tended to bear the brunt of the defunding.Footnote 260 As a result, many public health systems were, and in many cases still are, understaffed and underfunded.Footnote 261
4. United States Mental Health Law in Action
In the United States, people with mental disabilities are largely overrepresented in prisons and in the homeless population. Studies show that individuals with mental disabilities tend to be arrested more than individuals with no such diagnosis, and individuals with past civil commitments have a higher likelihood of arrest than individuals who voluntarily sought psychiatric help.Footnote 262 Arguably this is due to the deinstitutionalization triggered by President Kennedy's CMHA initiatives the middle of the twentieth century. With the total number of beds available to people with mental disabilities cut by up to 90 percent during the CMHA era, people with mental disabilities no longer had places to sleep and ended up homeless, abusing substances, or in prison.Footnote 263 Although many mental health advocates argue for people with mental disabilities to live on their own or with the assistance of community-based centers rather than in institutions, deinstitutionalization must be a gradual and community-based process to ensure that people do not end up homeless or in prisons.
V. Mental Health Law in Latin America
A. Background on Latin American Mental Health Law
1. Cultural Considerations
Historically, Latin American disability policy has excluded persons with mental disabilities from social aspects of life, with limited social participation.Footnote 264 There are many legally and socially imposed barriers to participation in society for people with disabilities in most Latin American countries.Footnote 265 Many nations in the region still lack physical and social access to public buildings, transportation, education, and employment. Further, Latin American societies have traditionally viewed people with mental disabilities as people needing charity and special protection.Footnote 266
From the 1960s to the 1980s, the Pan American Health Organization (PAHO), a member of the UN system that serves as the Americas regional office of the World Health Organization (WHO) and helps improve health and quality of life in the Americas,Footnote 267 promoted many international conferences for the improvement of mental health care in Latin America and the Caribbean. Many countries developed community mental health services and programs during that time, including Brazil.Footnote 268
2. The Caracas Declaration, 1990
In 1990, many Latin American countries signed the Caracas Declaration,Footnote 269 designed to promote respect for human and civil rights of persons with mental disabilities.Footnote 270 The Declaration played an important role in revising and redrafting domestic mental health legislations to guarantee civil rights for people with mental disabilities in Latin America. The goal was to create a framework for restructuring conventional psychiatric care in Latin America to bring it into compliance with the human rights principles of the WHO and the PAHO.Footnote 271 It also called for the integration of mental health considerations into primary care services and a shift from hospital-based care to community-based care with accessible, decentralized care, and prevention for persons with disabilities.Footnote 272
Soon after the Caracas Declaration, The Initiative for the Restructuring of Psychiatric ServicesFootnote 273 (“The Initiative”) was launched by the PAHO and the WHO in collaboration with several countries, international organizations, and mental health experts. The Initiative actively promotes and supports mental health reform efforts in Latin America and the Caribbean, thus further contributing to the development of domestic mental health policies in several nations in the region.Footnote 274
3. Present Day Considerations for Latin Americans with Mental Disabilities
Successful and innovative reform processes have taken place in most Latin American and Caribbean countries as a result of the Caracas Declaration and the legislative and policy changes discussed above. Many Latin American countries have developed community-based services and have downsized and/or improved psychiatric hospital services.Footnote 275 Mental health considerations have also been integrated into primary care in many countries.Footnote 276 Furthermore, there has been a strong movement on health promotion and prevention, which has been a major component of mental health reform processes in many countries of the region, including Brazil, Cuba, Chile, El Salvador, Nicaragua, Guatemala, and Panama, among others.Footnote 277
As a result of the Caracas Declaration, as of 2004, more than three quarters of the participating countries in Latin America and the English Speaking Caribbean have a national mental health plan or have enacted mental health legislation.Footnote 278 Sadly, the presence of mental health laws does not always equate to implementation or regular enforcement.Footnote 279 This is true for many nations in Latin America and the Caribbean, and unfortunately many of these nations are still not in compliance with international mental health standards.Footnote 280
There are, however, a number of important regional human rights documents that give rise to the right to refuse treatment in Latin America. These include the American Convention on the Rights and Duties of Man, (1948),Footnote 281 the American Convention on Human Rights, (1969),Footnote 282 and the Inter-American Convention for the Elimination of all Forms of Discrimination against Persons with Disabilities, (1990).Footnote 283 These documents all give positive rights to persons with mental disabilities regarding freedom and liberty.
For example, the American Convention on the Rights and Duties of Man includes a right to life, liberty, and security of personFootnote 284 and a provision that speaks to the right to equality before the law.Footnote 285 The American Convention on Human Rights states that persons have a right to have their physical, mental, and moral integrity respected under Article 5Footnote 286 and Article 7 provides that persons have a right to personal liberty and freedom from arbitrary detention.Footnote 287 The Inter-American Convention for the Elimination of all Forms of Discrimination against Persons with Disabilities’ definition of a disability merges both a medical and social model and the definition of discrimination is influenced by the United States’ Americans with Disabilities Act.Footnote 288
Although some of the legislation is in line with international standards, many Latin American nations are still lagging behind mental disability rights laws that exist in the United States and in other developed nations across the world.Footnote 289
4. Access to Adequate Counsel
Article 18 of the American Convention on the Rights and Duties of Man guarantees every person access to the court system to ensure respect for his legal rights, and requires the courts to protect him from acts that would prejudice him or violate any of his fundamental constitutional rights.Footnote 290 Article 26 guarantees due process of law.Footnote 291 Unfortunately, provisions that specifically address the right to counsel are missing from these conventions.Footnote 292
5. Adjudication of Latin American Mental Health Law
Regional human rights commissions and courts are vital to ensuring that international human rights are protected and enforced and serve as an engine for political and social change.Footnote 293 The Inter-American Commission on Human Rights (IACHR),Footnote 294 an arm of the Organization of American States (OAS) established in 1959, works with the Inter-American Court of Human Rights (IACtHR), created in 1979, to help protect human rights within the Americas.Footnote 295 In 1999, the pivotal case of Victor Rosario Congo v. Ecuador was decided by the IACHR.Footnote 296 In that case, Mr. Congo, a 48-year-old mentally disabled Ecuadorian man, was imprisoned at the Machala Social Rehabilitation CenterFootnote 297 where he was beaten with a club on the scalp by a guard, deprived of medical treatment, kept naked, and forced to endure complete isolation.Footnote 298 He eventually died of malnutrition, hydro-electrolitic imbalance, and heart and lung failure as a result of the State's acts.Footnote 299
The IACHR found the State responsible for the negligence and willful conduct of its agents who violated Mr. Congo's right to humane treatment under Article 5 of the American Convention on Human Rights.Footnote 300 They also found that Mr. Congo's solitary confinement constituted inhuman and degrading treatment in violation of Article 5(2)Footnote 301 of the American Convention on Human Rights, especially in light of the fact that during his isolation he was unable to satisfy basic needsFootnote 302 such as water, clothing, and medical attention.Footnote 303 Additionally, the IACHR found that the State had failed to take measures within its power to ensure the right to life of a person who, “partly because of his state of health and in part owing to injuries inflicted on him by a State agent, was defenseless, isolated and under its control” thus violating Article 4(1)Footnote 304 of the American Convention on Human Rights.Footnote 305
This was a monumental decision as it shows the Commission's willingness to use regional human rights documents to hold States responsible for the actions of its agents.
Another pivotal case coming from the Inter-American system is Ximenes-Lopes v. Brazil (2006)Footnote 306 decided by the IACtHR.Footnote 307 Not only was this the first Brazilian case heard by the Court, but it also was the first decision regarding persons with disabilities heard by the Court. In 1998, Mr. Ximenes-Lopes was recommitted to a private psychiatric facility.Footnote 308 He died in 1999 after suffering three days of ill treatment and violent attacks from the facility staff.Footnote 309 The Court held that the Brazilian government was liable for Mr. Ximenes-Lopes’ death because the State failed to “take care and prevent the breach of the right to life and humane treatment” and also failed to “regulate and monitor health care services, which are special duties derived from its obligation to guarantee the rights enshrined in Articles 4 and 5 of the American Convention on Human Rights.”Footnote 310 The Court held that Brazil had a responsibility to monitor the health care of its patients and prevent vulnerability even though it was a private (not State-operated) institution.Footnote 311
This case sent a clear message from the IACtHR that violations to a person, as well as his access to justice and due process, will not be tolerated by the international community. As a result of this landmark case, the municipality of Sobral in Brazil is now considered a model for mental health standards because it prioritizes residential therapy and/or outpatient care over institutionalized care and has abandoned all treatment programs that involve confinement. In fact, the municipality has been recognized nationally by the Ministry of Health as well as the pharmaceutical industry with the support of the Brazilian Psychiatric Association as the winner of the 2005 Social Inclusion Award for its commitment to protect its mentally disabled citizens.Footnote 312
B. Brazil
1. Mental Health Law and Brazil's Constitution
Brazil's 1988 Constitution, for the first time, contained provisions protecting the rights of persons with disabilities.Footnote 313 Article 5 establishes that it is the duty of the union, states, federal districts, and cities to care for public health and to protect people with disabilities.Footnote 314 Article 5 also protects against torture or inhumane or degrading treatment of all its citizens, regardless of mental health,Footnote 315 and guarantees all citizens the right to counsel.Footnote 316 However, actual enforcement of the right to counsel is an entirely different matter.Footnote 317
Article 203 of the constitution also requires the government provide social assistance to the “handicapped” and support their integration into community life.Footnote 318 It further guarantees a monthly minimum wage to those with disabilities.Footnote 319
Unfortunately, the Constitution does not specifically speak to the right to refuse treatment. However, over the past few decades, Brazil has made progress in reforming its mental health policies with strong support from the government and civil society. The passage of mental health legislation at national and state levels, the creation of community-based services, and the decentralization of the mental health system have all contributed to this reform.Footnote 320 In the 1980s, Brazil began transitioning away from large psychiatric hospitals to more community-based mental service programs, including implementing many primary care mental health projects such as group homes, rehabilitation programs, and workshops.Footnote 321 Additionally, the Constitution established the Sistema Único de Saúde (SUS) or Unified Health System.Footnote 322 The SUS's three basic principles are (1) universality of health care, (2) comprehensiveness of services, and (3) equity.Footnote 323 As a result of the SUS, there are now local networks of health services, mainly primary care services, all over the country, including in rural areas.Footnote 324
2. Domestic Mental Health Legislation in Brazil
Aside from the Constitution, Brazil currently has a relatively robust body of domestic legislation and policies that provide protection for people with mental disabilities. However, in the past, rather than adopting official documents to define mental health policies as the WHO requests, the government tended to accumulate the information and policies in reports and executive orders issued by the Brazilian Department of Health and then pass its own measures.Footnote 325 For example, Law 10216Footnote 326 of April 2001 legislatively helped reorient the Brazilian mental health care model to better protect people with mental disabilities and focus on access to mental health care. It also addressed issues including access to the least restrictive care; the rights of mental health service consumers, family members, and other care providers; voluntary and involuntary treatment; and mechanisms to oversee involuntary admission and treatment practices.Footnote 327 Recently, Brazil has begun to implement even more mental health legislation. For example, the Inclusion Plan of 2014 was recently established. While it has yet to enter into force, the goal of the plan is to bring domestic legislation in line with the fundamental rights contained within the CRPD.Footnote 328
3. Brazil's Mental Health Law in Action
There are many policies and programs that have been implemented to support people with mental disabilities within the country. For example, strengthening Brazil's community-based services was one of the country's main policy goals. This notion inspired the creation of Centers for Psychosocial Care (CAPS) – mental health centers equipped with outpatient and partial hospitalization services.Footnote 329 According to the WHO, by 2006, Brazil had established 673 CAPS for adults, 66 special CAPS for children and adolescents, and 476 group homes for people with severe mental disabilities.Footnote 330 There is also a recent trend toward allocating more mental health funding toward community services rather than psychiatric hospitals.Footnote 331 One example of this is the Return Home ProgramFootnote 332 enacted in 2003. This innovative program was established to deinstitutionalize long-term psychiatric patients and help them to integrate into society by providing patients with a monthly rehabilitation stipend transferred directly into their bank accounts.Footnote 333 Currently, there are over 2,500 individuals receiving the rehabilitation benefit.Footnote 334
Brazil has implemented some innovative programs to help deinstitutionalize people with mental disabilities and integrate them into society in a gradual manner.Footnote 335 However, the nation is lacking an effective monitoring system for treatment and follow-up cases in outpatient facilities.Footnote 336 Further, despite the improvements identified in Brazil's mental health policy, deaths are still occurring in psychiatric hospitals similar to the death that occurred in the Ximenes-Lopes case, and while the numbers presented on replacement services such as CAPS, Residential Therapeutic Facilities, and Communal Centers are promising, they are still insufficient to meet the demands of the population.Footnote 337
Although Brazil still has a long way to go, they are leaps and bounds ahead of other nations in terms of protecting the rights of persons with disabilities and should be used as a point of reference for other countries all over the world in moving toward better mental health care and support.
VI. Mental Health Law in Africa
A. Background on African Mental Health Law
1. Cultural Considerations
Many African nations have relatively modern constitutions. This is due in large part to the history of colonialism on the continent followed by independence. Many of the new constitutionsFootnote 338 tend to have provisions that speak more to human rights and some even address the rights of persons with disabilities specifically, as compared to older constitutions where many human rights protections had to be interpreted by the courts or read into the constitution.Footnote 339
Although many African nations are progressive in terms of their constitutions, there are many cultural and religious beliefs throughout Africa that negatively impact people with mental disabilities. For example, the group Human Rights Watch documented the horrific use of prayer camps in Ghana where people with mental disabilities face unimaginable conditions.Footnote 340 Many people believe that individuals with mental disabilities have been cursed and that prayer camps may help heal them. Individuals sent to these prayer camps often spend days chained outside with little or no protection from the hot sun or rain, and are forced to eat, sleep, and defecate in the same spot.Footnote 341
2. African Charter on Human and Peoples’ Rights
The African Charter on Human and Peoples’ RightsFootnote 342 is an international human rights document that aims to promote and protect human rights and basic freedoms throughout Africa. Provisions of the Charter address civil commitment and the right to refuse treatment. Under Article 6, every individual has the right to liberty and to the security of his person.Footnote 343 No one may be deprived of his freedom and the African Commission on Human and Peoples’ Rights may investigate any reports of misconduct.Footnote 344 Violations may be brought to a regional human rights court established in 2006 by the Charter.Footnote 345
3. Present Day Considerations for Africans with Mental Disabilities
With the influence of the CRPD, many nations are moving toward community-based solutions, rather than institutionally-based solutions for persons with mental disabilities. However, African nations face challenges different from other nations in areas of funding, infrastructure, and shortages of health care workers.Footnote 346
A successful movement toward community-based treatment solutions requires an abundance of health care workers. African nations tend to have limited psychiatrists, psychiatric nurses, psychologists, and social workers.Footnote 347 In terms of funding, African nations tend to have a lower percentage of State funding allocated toward mental health programs than other nations across the globe.Footnote 348 Further adding to these issues is the fact that communities within many African nations tend to be scattered throughout the country with limited public transportation, access, and infrastructure.Footnote 349
4. Access to Adequate Counsel
Access to adequate counsel on the continent of Africa has been addressed by the African Commission on Human and Peoples’ Rights, which has passed a series of resolutions regarding the right to counsel.Footnote 350 Among these documents is the Principles and Guidelines on the Right to a Fair Trial and Legal Assistance in Africa, (2003),Footnote 351 which provides “prompt access to a lawyer and, unless the person has waived this right in writing, [he is] under no obligation to answer any questions or participate in any interrogation without a lawyer being present.”Footnote 352 These Principles emphasize that States shall ensure all persons receive equal access to lawyers regardless of, among other things, disability, race, origin, sex, gender, and language.Footnote 353 Despite these guidelines, access to legal aid at all stages of the justice system is generally unavailable in many African nations. Even where formal legal aid programs are available, coverage is routinely inadequate. Indigent defendants, victims, and complainants are regularly unable to prepare and argue a defense, seek assistance, or seek legal advice on filing a claim. This essentially ensures that the poor are effectively “priced out” of the criminal justice system.Footnote 354
5. Adjudication of African Mental Health Law
Purohit and Moore v. Gambia Footnote 355 (2003) was a landmark case heard by the African Commission on Human and Peoples’ Rights. Paul Moore, a student and mental health advocate, was visiting a mental health facility in Gambia and was appalled by the patient treatment provided by the staff. He filed suit with the Commission as a third party on behalf of current and future patients claiming that the legislation (the Lunatic Detention Act) was outdated and not in conformity with the African Charter.Footnote 356 Normally, a domestic tribunal must hear cases and all remedies must be exhausted prior to being allowed to appeal to the Commission. In this case, the Commission noted that redress was not available or realistic for these complainants via domestic law and thus the case was admissible directly before the African Commission on Human and Peoples’ Rights.Footnote 357 In its holding, the Commission relied on the MI Principles providing that it is the State's obligation to undertake the responsibility to bring domestic laws in line with international or regional documents that have been ratified.Footnote 358 This is an important example of a regional human rights body holding a State responsible for inadequate domestic legislation for people with mental disabilities.
B. Kenya
1. Mental Health Law and Kenya's Constitution
The Constitution of Kenya,Footnote 359 promulgated in 2010, provides several specific provisions for persons with disabilities.Footnote 360 It states that persons with disabilities are entitled to be treated with dignity and respect and cannot be demeaned.Footnote 361 It provides access to educational institutions and facilities for persons with disabilities, and not only calls for integration into society but also requires people with disabilities have access to all places including public transportation and information.Footnote 362 It further obligates the government to make use of sign language, Braille, and other forms of communication available to people with disabilitiesFootnote 363 including access to devices that help overcome disability constraints.Footnote 364 Further, the Constitution provides the State shall ensure progressive implementation into governing bodies by mandating that 5 percent of the public elective and appointive bodies are persons with disabilities.Footnote 365
2. Domestic Mental Health Legislation in Kenya
Although the Constitution does not specifically speak to the right to refuse treatment, there is domestic law in Kenya that speaks to that right.Footnote 366 The Mental Health BillFootnote 367 of 2014 (which replaced the Mental Health Act of 1989)Footnote 368 makes references to the human rights of those with mental disabilities and establishes a Mental Health Board to monitor and enforce those rights. In the past, similar boards have been written into legislation yet they have never been implemented.Footnote 369 It appears that the 2014 Mental Health Board has yet to be established and just like past boards has seemingly fallen by the wayside.
According to the new Act, where a person with a mental disability is capable of making an informed decision, the health care provider shall inform the patient of his or her right to choose an appropriate treatment of his or her own choice and shall obtain consent in writing prior to the administration of such treatment.Footnote 370 If a person is incapable of making an informed decision regarding treatment, consent must be obtained from the person's representative.Footnote 371
The individual is also entitled access to treatment informationFootnote 372 and has the right to participate in forming his or her own treatment plan.Footnote 373 The individual is entitled to choose or appoint his own representative if needed and the representative may help if the individual is incapable of participating in the formation of a treatment plan.Footnote 374 Finally, the Act provides that no mental health care, treatment, or admission shall be given to persons with mental disabilities without informed consent or the informed consent of the representative.Footnote 375 Valid informed consent must be documented and must satisfy the following elements:
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a) the person (or the representative) must be competent to give the consent;
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b) consent must be given freely without threats or improper influence;
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c) there must be appropriate and adequate disclosure of all relevant information regarding treatment including information on the kind, purpose, likely duration, effects, and expected benefits of the treatment; and
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d) where available, choices shall be given to persons with disabilities.Footnote 376
Further, emergency treatment is only permitted when there is an “immediate and imminent danger to the health and safety” of the person with a disability or others and the nature of that danger shall be such that urgent care and treatment are required to stabilize the person.Footnote 377 In such a situation, the emergency treatment 1) shall not last longer than necessary to stabilize the person, 2) shall not exceed 72 hours, and 3) is only allowed to the extent necessary for treatment.Footnote 378
Where treatment is provided, persons with mental disabilities shall not be physically restrained or secluded except in accordance with the law or a set provision.Footnote 379 Seclusion and restraint shall only be used where it is “strictly necessary” to prevent immediate and imminent harm to self or others and shall not be prolonged beyond when strictly necessary for the individual to co-habit peacefully with others.Footnote 380 The reasons, nature, and extent of the seclusion shall be recorded and kept in the individual's records,Footnote 381 and the representative of the person with a mental disability shall be promptly notified of the use of seclusion or restraint.Footnote 382 Seclusion and restraint may not be used as punishment or convenience, but shall only be used as a last resort and the “necessary treatment shall be availed.”Footnote 383
The Patients’ Rights Charter (2013),Footnote 384 issued by the Kenyan Ministry of Health, specifically addresses the right to refuse treatment via Article 6 which provides that any individual may refuse, withdraw, or withhold treatment as long as that refusal does not create an immediate danger to self or others and provided that the person's competency and consciousness has been taken into account.Footnote 385 This is a vital document in that it is the first official piece of Kenyan legislation that protects the rights of individuals seeking treatment in hospitals and mental health care facilities to refuse that treatment should they choose to do so.Footnote 386
3. Kenya's Mental Health Law in Action
The right to counsel in Kenya seems bleak. While the African Commissions’ Principles and Guidelines on the Right to Counsel have provisions pertaining to the right to counselFootnote 387 there are still many logistical obstacles to implementing that right in Kenya. For example, a recent study by the World Bank, and in association with law societies, found that of the Kenyan population of approximately 39 million, more than three quarters of the population live in rural areas and there are less than 4,000 lawyers in the entire nation.Footnote 388 With numbers like this, it is practically impossible to provide adequate legal counsel to the entire population.
In any event, Kenya has recently established progressive mental health legislation, which specifically includes protections for the right to refuse treatment for patients with mental disabilities. Fortunately, much of this legislation is on par with current international standards. However, it is still very new, and thus there is little information as to its efficacy. The question that remains is how effective the legislation is, and whether it is being enforced. This is the biggest issue with international human rights in general, and specifically mental disability law.Footnote 389
VII. Comparative Analysis of the United States, Brazil, and Kenya
The state of mental disability law in many parts of the world today reveals a pattern and practice of ongoing abuses that is “reminiscent of the state of American mental health facilities 35 or more years ago.”Footnote 390 According to Oliver Lewis, “[m]ainstreaming ‘mental disability rights’ into our regular human rights agenda is a crucial step towards thinking seriously about protecting the rights of people with disabilities.”Footnote 391 As a result of the CRPD and other international human rights documents and systems, there have been important advancements in the area of mental disability law and many mental disability rights laws in Brazil and Kenya are on par with international human rights standards. However, it should be noted that while both Brazil and Kenya are on the way toward alignment with the CRPD standards, they are not quite there yet.
The United States has developed more case law than any other nation but little legislation or constitutional protections that speak specifically to the right to refuse treatment. The United States, with one of the oldest constitutions in the world, does not specifically address many of the hotly debated issues of today such as gay marriage or abortion. It also does not speak to the rights of persons with disabilities. Further, the United States is unlikely to rewrite the Constitution. For example, there have only been twenty-seven amendments since its enactment in 1787.Footnote 392
One of the biggest obstacles not only in these three nations, but all over the world, is realistic access to adequate counsel,Footnote 393 which is an essential part of protecting the rights of persons with mental disabilities.Footnote 394 The United States has protections for the right to counsel generally within the Constitution, however, case law has not yet clearly mandated a right to adequate and effective counsel for persons with mental disabilities. The African Commissions’ Principles and Guidelines on the Right to Counsel includes express provisions regarding the right to counsel generally,Footnote 395 however, Kenya has yet to implement any domestic provisions that speak to this right. Coupled with the discrepancy between the population and the number of lawyers in the country, the African Commissions’ provision on the right to counsel is in essence unworkable. Brazil's Constitution also contains a provision for the right to counsel.Footnote 396 While Brazil's domestic legislation is somewhat nontraditional, the country has made substantive efforts to comply with CRPD standards and has worked to deinstitutionalize individuals in a gradual, community-based manner. Because both Kenya and Brazil have signed and ratified the CRPD, I remain hopeful that their domestic legislation will fall in step with the widely accepted international standards and that the legislation will actually be implemented and enforced as it was designed to do.
VIII. Conclusion
Over the past few years there have been drastic improvements for the protection of persons with mental disabilities in international human rights law, especially with conventions like the CRPD. The MI Principles established minimums for civil commitment and included provisions that protected the right to refuse treatment, but there was no express international hard law on the right to refuse treatment until the CRPD. The CRPD brings new hope for the rights and general dignity of persons with mental disabilities.
The United States may be viewed as a world leader in some areas, but the reality is that the United States is lagging behind when it comes to policies and laws protecting the right to refuse treatment for people with mental disabilities. One blatant example is the fact that the United States still has not ratified the CRPD although it signed it in 2009. Where generally the Inter-American system seems to have more regulations and case law on mental disabilities than the African system, which tends to be underfunded, there are many nations in Latin America lagging behind on protective mental health legislation as well. Brazil's Constitution is sparse regarding the rights of persons with mental disabilities, let alone the right to refuse treatment, where Kenya's updated Constitution has specific rights for persons with mental disabilities but does not speak to the right to refuse treatment. Kenya's domestic legislation speaks to the right to refuse treatment in great detail, but faces greater barriers in enforcing such protections.
Documents such as the CRPD mandate ratified State Parties to amend or create legislation in line with international standards.Footnote 397 However, the right to refuse treatment is still a complex issue, as we have seen, and there are many competing interests at stake. Just because laws are on the books, does not mean they are enforced. Although some nations require consent to treatment, in everyday workings in hospitals, especially in rural areas with less trained staff and less monitoring, these rights are routinely ignored.Footnote 398 That is why it is imperative to have regional systems in place that help monitor and enforce rights for persons with mental disabilities. However, as Professor Perlin points out, these regional systems are also in effect useless without access to adequate counsel.Footnote 399 “Simply put, if active, trained counsel is not provided for patients seeking to interpose this right, then the right becomes nothing more than a paper document: useless and meaningless (and perhaps, counterproductive) in the ‘real world.’”Footnote 400
One of the most valued liberties in a civilized society is autonomous decision-making in matters affecting the body and mind.Footnote 401 Unfortunately, this is not a reality for a majority of the people with mental disabilities all over the world. There is still much progress to be made to ensure the protection of the rights of persons with mental disabilities regarding the right to refuse treatment. However, I remain optimistic. Documents such as the CRPD and recent decisions in regional human rights courts lead me to believe that mental disability rights advocates are not giving up anytime soon. I have to believe that someday “no” really will mean “no” for persons with mental disabilities in institutions.
